My If only for one: Making copies


I haven’t shared my IF ONLY FOR ONE’s in awhile and two days in a row BAM! This story took Place Thursday May 7th 2015. I have to start with a little foreshadowing. I was getting ready for the day and I decided to wear a new top I purchased a few weeks ago. It is made of thin tshirt like material so poking sticking a pin through it would surely leave an obivous the next time I wear it. Out of habit I went to stick my lapel GRAY RIBBON and paused thinking well its a new shirt and hmmm what else could I wear ​for my gray today,​ my bracelet but you can’t see the ribbon . STOP! I said “SELF” its a shirt not a BRAIN TUMOR. It’s a tiny hole in a t-shirt replaceable not a massive slice in my head. No second guessing ​now​ and WHALA I put the ribbon in my shirt. ( seems trivial but stick with me)
Now to take on my day. I ran a bunch of errands and on my way home I stopped at a FEDX print store so I could make some copies of the GRAY MATTERS FOUNDATION poster “Wear your Gray in May” . I have my flash drive in hand and ask for help. A nice man named Bill walks me over to self serve and this is where it happened. We chatted for a bit with small talk. He has a PA accent. My husband is from PA so that opened the door for conversation. I ask what brought him to AZ and that is all it took. Next he walks me through the steps to get the file opened and on the screen. Once the first copy was made the ​BT ​conversation happens. I ask did he know it was BRAIN TUMOR AWARENESS month. NO. He reads the poster and it opened the door for even more questions. I share how I started this foundation and what I do and my passion for the cause because having experienced it first hand I KNOW! what it feels like to need that encouragement and support. Then it happens ……He gives me that look and Asks YOU???? Yes me I reply. He went on to say how lucky, blessed I am. And then the look that breaks my heart. That tone I have come to know way to often, that moment when I sense he knows more about brain tumors than he cared to EVER! He gives a BIG SIGH Really? and with the heart broken look went on to share because—-”my brother in law was diagnosed and died in less than a year” Before another word was said those horrible three letters entered our conversation. GBM ( in my mind DANG IT! ) I am so sorry Bill. He shared how tough it was to watch but how wonderful his sister in law handled it. We chatted a little bit more and I shared more about the special details of May and wearing gray. Oh my goodness it occurred to me Bill is my one today. I shared my business card with Bill and apologized I didn’t have a brochure but ​please keep take a ​ poster​. I offered for him to give his sister the card. I shared if she was open to it I would be happy to reach out to her . WAIT I was thinking & It hit me. I am wearing my special ribbon the one that is going to leave a small reminder . I only have one of these ribbons but that’s ok​ they need it. Today ​ he & his sister are my ” if only for one”. ​I proceed to remove my GRAY RIBBON so I can gift it. ​I asked Bill​ ” ​would your sister wear a ribbon if she had one​?” OF COURSE. Well give this to her. It’s ​a ​special​ ribbon because ​ it has a little angel on it and it ​represents those who fought a good fight. I always tell my buddies I am a voice for those who no longer have one. She can wear this and be reminded he is not forgotten and someone is a voice for him in this cause. He will not be forgotten EVER. Bill said he just couldn’t take the ribbon. I shared with Bill I knew this was for his family because I almost didn’t wear it today and now he shares his story. It for sure is meant to be his sisters ribbon. You and your family are “my one” and I was supposed to give this ribbon to you. You just never know the reasons but follow those little nudges.

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SUNSHINE You make me happy when skies are GRAY

my appointed SUNSHINE

This story took place June 23rd 2015 the fourth Tuesday of the month.  For those who have followed any portion of my journey you know that I have donated my time facilitating a local BRAIN TUMOR SUPPORT GROUP for over 10 years and that the 4th Tuesday is dedicated to this group.   I typically schedule nothing all day and I get to the hospital rested and early to meet and greet the families both new and those who have attended for years.  I like to be my authentic self.  I want to be completely and whole heartedly  in the moment so rested is best.   Today was no different except for one little change.  I have been trying to schedule a brief follow up appointment with a Corporate Brain Buddie and today they could meet me briefly before the group at the hospital.  So I stepped out of my normal and scheduled a short meeting before I picked up the parking stickers etc.   I had it all planned so I thought.   An important piece to this story is each time I drive in town for group I always say a little prayer and ask that all who are supposed to be at group arrive safely.  I ask that I have ears to hear those who need to be heard and eyes to see those that need to be seen.  I ask to help me be all I was created to be.  I want to be a good leader.   I know without a doubt I was meant to help the hurting , the sick and yes sometimes dying.  I was meant to encourage and share hope.  For me I feel  without prayer I would not be me.  Well I got to the hospital and I text the person I was supposed to meet letting them know that I had arrived.   The reply was “I have to cancel” AGAIN.  Of course I had 2 choices get upset or live in the moment and be still.    I choose the second.  So I was quiet  and figured well I am early  and not in the heat , and not rushing decide to  relax before my next stop.    As I sat I  people watched and then this one couple stood out.  I saw this lady and man exiting the doctors office.  The wife pushed the hubby in his chair to the side and she walked down the hall and came up and back a couple times.   I asked if I could help her find something she said  ”actually I am looking for water and there is a fountain but no cups.”     Me- hold on  I think they might have some in the Dr’s office.   I went in the office and sure enough they did.   I went one step further  and  filled it with  water  from a machine.  I walked out and gave it to them.   The man who I now know and call Mr. Bernie asked me my name ?  ( HE OPENED THE DOOR  for conversation and this is where it began,) He said I looked familiar.   I asked if he had a brain tumor he said no but began to tell me why he was at the hospital  and then our eyes met.  He then asked what I do and I told him how I have survived BC and he said I was a true miracle. He told me  how he is a retired Chaplain and  some of his story about he and his wife.  I told him I trained to be a volunteer chaplain after my first surgery and shared some of those stories  and maybe that was our connection.  His wife just couldn’t believe the connections and sat back and smiled.  He looked up and said ” I was a Chaplain for many years in hospitals”    Communication is vital  and YOU HAVE THE GIFT,   me- what do you mean?  you know how to do it , You know how to communicate with those who need support , care.  Your a good communicator.    I scooted down so I could look at him and not over and he asked me Do you know the song “YOU ARE MY SUNSHINE”   Me-  Oh my goodness do I???  I told him he was going to make me cry  I call my son that and my daughter my daughter shine.  More importantly I just gave my son a wooden plaque for his birthday  a few days ago he turned 26.  The plaque said exactly that ” YOU ARE MY SUNSHINE” I shared how  I wrote no matter how old you are you will always be my sunshine.   Mr. Bernie said that he could tell I was   SUNSHINE to those I meet .    He asked if I knew the words?    I said I believe I do.  He said sing it with me.  He looked at me and then  his wife and with a big smile in the middle of the hospital tears flowing down my face I sang YOU ARE MY SUNSHINE with him.    Here is the what I call the “GOD wink”   I could have let the appointment that didn’t happen cause frustration and I would have left.   I choose to be still.   I choose to be in the moment not caught in disappointment , and in that moment I realized I never got stood up I was actually at my destined appointment.  On that car ride in to my meeting  I prayed and believed I would help all those I was supposed to.   Well I DID!   and in  the process I was blessed before my group even started.  Now here is the part that makes the smile even bigger.  I chatted with them and walked them to the door to meet their ride.   Mr. Bernie shared  his father worked with Mr. Jimmie Davis who wrote the song YOU ARE MY SUNSHINE.   Mr. Bernie’s father actually helped write the tune for the song.    Mr. Bernie is due back for more surgery  soon.   I gave his wife my card and told them to call me so I could be his sunshine!   I will decorate his room and the only gray that will be in there will be GRAY MATTERS!  If we are still and in the moment we may just receive the sunshine we need.  Today Mr. Bernie was my #ifonlyforone he was my #sunshine

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I learned much from someone so little : CARSON is his name

Baby Carson is the youngst #LILGMFbrainbuddie.   His family and I  connected the very first time we met. The story started  when I watched CBS5 news and their pay it forward story. I then reached out to the family and started speaking with Carsons Uncle Nick. I shared how GMFoundation mission is to encourage and educate.   From that call we  set up a day to meet Carson, his daddy Bubba and the grandpartents  at the hospital.  Like a typical graymatters visit I planned to decorate the room and share some Brain Tumor educational information which I would leave with them.  I learned Carson is a Spiderman fan so I went on my mission to purchase SPIDEY decor.   All the fun set aside this was not easy.  Watching this baby fight for his life was something I had only read others do.  I have seen photos on social media  and supported and encouraged those living it but this was up close and personal, This just got REAL.  It’s great to support the walks and the rides and all the great work the other NPO’s are doing for research because I get to  meet  these kids in person at the events.   It is a whole different scene when you are on the cancer floor and see these little ones  in bed sick.    I visited just about everyday once I met this family.  This journey was now part of me, I lived it.   I held Carson, played with him, I helped clean him, & myself after being pooped on while holding him.  POOP AWAY!  I’d  say just live little dude just live.  I was there when the doctors talked to the family,   WOW ! I still say in ANY environment there are AWESOME communicators and there are those who need to take communication 101. There were a few who needed some 101.   It made the family very  happy when I was able to have some of my friends in the brain tumor world aka experts to help explain some of the information that was being given to them so they could make educated decisions.  This part of my journey CONFIRMED that every person especially a parent with limited resources deserves to understand what the choices are.   They should not just be given a piece of paper and told to read and let me know what you want to do.  TGEN and NBTS were awesome resources in helping this family become better educated to choose their next steps.   Carson is not my child but my brain buddies ALL of them are my family and this peds thing was a whole new walk.    If you have been a fan or a friend on my social media you knew about Carson.   You knew when it was good, when things were bad, or the day to day.  My biggest lesson on the BABY CAR journey was this:     Hope never grows old  & it never starts to young.   Carson was diagnosed with Medullablastoma and was not expected do very well.  He was dischared the first part of the year with clean scans and no sign of it spreading to the spine.  No more chemo.  Oh how I think back to when  I watched him get so sick  from all the treatments and infections in his feeding tubes.  I would stay late to rock him to sleep  or arrive  early to play with him and his toys before he was overtired with all the therapy.   I am so GREATFUL for knowing Carson and his family.  He may be the youngest but I have learned so much from such a little dude!  I spoke to him just last night and he says Hi auntie lanette.   My heart melts and is for ever changed.  I will never forget watching him leave that hospital.  I cried happy tears.  I am awaiting his 3rd birthday in a few weeks when I get to see him again.  I am told he has a full head of hair.

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Kris from TAMPA

Kris is her name and  Tom  was her husband.  I never met Tom in person but I did through Kris. You see a loved one can always be kept alive in memory if you share their story.   I was a new  attendee to the Florida Brain Tumor Association  and had to learn who was who.  Go with me it was like the HIGH SCHOOL Days of the brain tumor group.  Finding out who the cool kids were.  NOTE:  I was not a popular kid in highschool I am the same girl just a good friend.  I had no idea attending the FBTA events would be a life changer.   My life is forever changed because of my brain buddies in Florida.

Kris,  she is a caregiver.  Oh yes she cared for her Tom and how she loves him so.  Tom  had a brain tumor and it was the GBM we all hate.    I met her after her Thomas pysically died but she has kept his life lived and memory very much alive.  She has been his voice and teaches others to do the same.   I remember when we became friends It was like yesterday.  My first time meeting her was Jan. 2001.   I know this because My hubby and I attended the conference pre-honeymoon.  We got married that week and attended the conference that weekend.  Today I want to tell you about Kris.   It wouldn’t be until years of attending FBTA and the get togethers in between that I would learn how I was given a living angel to see me through this journey with Brain Tumors.  I am not the only one who feels this way just ask those who know her.   So the first year I met her everyone was kind.  HA! the next year was my initiation.   Oh my then our trip to WASHINGTON DC GRAY in MAY .   She led the way and  BOOM she made some things move.   Ok that 2nd year my initiation year  in FL Kris and the crew let me call our friend Murray MURPHY the whole weekend yes my sort of initiation.  We still laugh about that today.   I remember the day I was introduced to Thomas.   We were at the after party only a few were invited  ( I felt special ok I am special and not ashamed to say it! yep yep   )  Kris was sitting off to the side clinging to this frame.  I had seen her caring it around and then she asked.   Do you want to see my Tom.   Of course I replied.   I can still see her face, her tears but the joy of holding him.  It was just a photo but it was her husband.  There is something about telling the story of someone you love.  There is even more passion behind the voice when they were taken to soon.  Kris was this person.  She was part of a cause that was powered by LOVE but she was determined to never let the thief  win and trap her from life.   Kris is powerful in business.  Kris is an amazing mom , wife and friend.   Kris is one of the few who became part of a cause and never walked away.  Death couldn’t make her run.  Death caused her to become more devoted and  a reason to never loose voice.   Kris is my friend.  She believes the best can happen. She has held and loved the best and was left with it stolen.  The beauty of the brain buddie world is we love.  To know Kris is to love Kris.  If you are her friend then you are loved.  Kris taught me that when we unite as a group we can lift.   We have learned only a few understand but brain tumor families are a different family.  Once your in well only you can choose to walk away but most find a spot and hang on.  Caregivers move mountains.  I could write a book instead of a blog but Kris knows how I feel.   We have lost so many of those we love.  We have cried together, Oh how we have laughed.  We never forget!   We will  just grow older together and always reminisce.        FRIENDS NEVER EVER END!

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You mean I was not the only one?

Lanette’s Little Bit’s

I attended my very first conference in California hosted by the National Brain Tumor Foundation in 2000.  ( NBTF is now NBTS they merged a few years back)  It was a whole weekend filled of information.  I arrived on Friday morning and Friday evening it began.  They had an introduction and explanation of the next few days.   I was filled with anticipation.  I was so excited to learn I  could purchase the recorded sessions on cassette at the end of each break out.  This was all new to me.  This was perfect but difficult to decide which session to go to next.  I  purchased every session so I could  take it home to share and relisten.  Funny right  I was  purchasing cassettes.    So much took place that weekend but one session stands out.  There was this drug researchers were working hard on it was called AVASTIN.    I couldn’t write enough infromation down. I couldn’t grab enough handouts. OMG this was true information overload and I wanted more.   The biggest impact the weekend had was meeting “other survivors”.   I was not the only one.  They had fresh scars , some wore bandanas. Some had trouble walking and others trouble talking.    It was also a little scary because I didn’t suffer some of the side effects I was seeing others suffering from.  I was there alone and so many others had their caregivers WOW this was so much to take in.  It was all the introductions the new friends I can still remember the faces not the names.  I remember the dinner it was a fun event they had on Saturday night.  They assigned seats and  you were encouraged to connect with others.   It was the first time I met David M Bailey and Matthew Fullerton.  It is the first time I heard david perform and I was so moved by his song  ”ONE MORE DAY”.   After the DMB concert  I knew that my family had to hear this.  This music was  proof we were not alone and proof  there is HOPE.   I bought the CD and even more awesome david autographed it, I was so happy.  I can still remember the fun everyone had at the dinner.  Who could have predicted that Matthew and David would become two of my best friends.  They would be part of the many #memorymakingmoments that would change my life forever over the course of the next 10 years of  my #braintumorjourney ( Matthew and I are #BESTIEBRAINBUDDIESFOREVER  and our beloved david more about him on another #Lanette’sLittlebits #gograyinmay day.  ) During this weekend I just kept saying  My family  had to expierence this!    I just had to let them know we were not the only ones!  Then it happened I met Julie.  Julie was her name.  Julie G.  She was diagnosed with the same tumor as my grandma but she was living this made me happy.   I never met anyone with the same tumor as my grandma.  Honestly I really didn’t know much about brain tumors so this event was educating me REAL FAST!   Now Julie and this singer and his best friend are all GBM survivors this is incredible.  Julie and I chatted I learned  she had two girls ,she was a single mom just like me.   Julie was there with her parents so they could try to make sense of this madness.    I met them as well.   Before the weekend was over Julie and I exchanged contact information and agreed to stay intouch and to maybe meet up and attend another conference.  The weekend went by so fast.  I went home and the story goes on but it is my brain buddie Julie that I want to stay focused on.   Keep in mind this was just about 18 years ago and social media was not what it is today.  ANCIENT Aol was the “THING”.  You know the “YOU GOT MAIL”   I was just learning how to do the whole email thing and I would sign on in hopes to chat with JULIE.   We stayed in touch and then I noticed about a year into becoming friends I didn’t hear from her.  No more YOU GOT MAIL from Julie.   No more seeing her name off to the side letting me know she was online.   This is when I learned the value of always getting a caregiver or loved ones contact information just incase.   It still didn’t sink in.  I was new to all this brain tumor stuff.   Life is Life and the not communicating  I just figured we get busy and move on.    I received my  quarterly NBTF  snail mailed newsletter.   Flipped through and then it happened.   The head line read something like this:  Two girls The daughters in memory of their mother Julie G  raised over 10k hosting a fundraiser for research.  OMG  it was Julie.  Her daughters.  My friend.  No wonder no emails.  Oh no my heart hurt I cried. I shared with my then boyfriend now husband.   My heart new this already but my mind once again got a reality check LIFE IS SHORT.   Oh and that  David M Bailey song  ONE MORE DAY it  meant even more to me now.          BRAIN TUMOR AWARENESS :  Her name was Julie and she died, I cried and life got real.  I could be a Julie.  Ok so my tumor was  not GBM  and I was not my GMA but wait they tell me my tumor diagnosis can turn ugly like GMA’s.   So today Her name was Julie and I will never forget her.   If you are on this journey you understand.  That’s all.

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Brain Tumor Awareness Month 2016

It’s time to come together for the the next month to make some noise.  As you know we have many in Washington Dc that have HEADED TO THE HILL to represent! Thank you  in advance to all those Brain Buddies who are making a difference and being our voice.  Our mission at The Gray Matters Foundation has  always been to share support not statistics, educate , spread awareness, share hope and creating a smile in the process.  Our participation in #BTAM  will be a daily post called Lanette’s Little Bits.   Our Gray in May  will  be stories of those Lanette has had the pleasure of meeting and why the foundation is what it is today. These stories will include Survivors, Shout outs to the docs that now support our efforts, Caregivers ( oh how the cause has progressed because of our caregivers, spouses and loved ones)  Lanette will share about some of the business relationships that have stepped up to support the cause so we can continue to do what we do.  The next 30 days will be story telling, It will bring to life exactly why BTAM is important to Lanette and so many of those effected by these monsters called brain tumors.  The posts will include her #ifonlyforones #BTAWARENESS from HER  eyes ( a survivor, caregiver, friend and NPO president.)  Of course our month would not be a true #GMFBRAINBUDDIE perspective with out plenty of #tonguesattumor photos please be sure to submit your photos for us to share and we will let the world know what we think #braintumorsstink.    Lastly don’t forget to use your hash tags whenever posting

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Thankful Thursday

THANKFUL THURSDAY:  I can’t thank @E Joyce Rend Webb enough.  She was the brain buddie  who requested I be featured in the Card Maker Magazine back in 2011. The really cool part of this story was she’d  been making and donating cards to the foundation in memory of her dear friend  who had passed from a brain tumor as a way of giving back.  We would soon learn that I was friends and worked on fundraisers with the adult children of her friend.  We had no idea of the connection until after the article.  When I was featured  in the magazines REACH OUT PROGRAM I started receiving so many beautiful cards it allowed me to expand my card sending far more than I could have imagined .   Since 2011 I have established a few lasting relationships with some of my first card makers and they have continued to bless me with cards and  some even supply me with the stamps to mail them.   I even had bloggers sharing the story requesting donors to supply stamps to help cover postage cost.  Postage-shipping is our biggest expense and Embelished-hand crafted cards increase the cost of shipping.  Stamp donations really made a difference.  Now Spring 2016 the magazine choose to feature the foundation again and the cardmakers stepped right up.  The cards and personal stories along with the boxes with why they are helping  is my confirmation- I am to KEEP ON DOING WHAT I AM DOING.  I am so blessed and each BRAIN BUDDIE receiving the card feels loved.  I will post photos  of the cards soon they are all so beautiful.  Today I want to say  THANK YOU TO ALL of the cardmakers and to  Card Makers Magazine for featuring me as their spring REACH OUT RECIPENT   http://goo.gl/P5nbaA

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#drinkonefordavid

I write this post to wish my beloved brain buddie  a HAPPY 50th BIRTHDAY.  A recent post on his fan page encouraged followers to share stories of times you may have shared a cup of coffee with david.  This sparked an idea to celebrate his life lived. Perfect I thought it’s his birthday and a great time to share some coffee and his story with others who may not have known him.  I want his legacy to stay alive because  his pain was not in vain and HOPE LIVES if we SHARE IT.   So to create a special 50th #memorymakingmoment I shared a cup of coffee and his story.  I enlisted my daughter for help:  We handed out gift cards for a cup of coffee and asked people to have a cup of coffee in memory of my friend.   My daughter and I went to our favorite coffee place DUTCH BRO’s. For those who don’t know its a drive up coffee house.   The location we frequent typically has a line at least 5 to 10 cars when busy.  My daughter had the camera ready, I had the gift & post cards and a few cd’s  from when I helped with his tours. I approached the first car:   Hello!  we would like you to have a cup of coffee in memory of my friend.  He would have turned 50 on Friday He had a brain tumor was given weeks to live and lived 14 after being dx with an aggressive brain cancer. He shared HOPE! I wanted to do something to honor his memory.  He loved coffee he wrote songs about it. (I gave them a post card with his photo and cd list) it only made sense to ask others to #DRINKONEFORDAVID. Please enjoy coffee with an angel .  People were so taken back. Some asked what’s the catch ??  There is no catch but one request?  Will  you take a quick photo so we can share with the family & friends that he is not forgotten.   Let me tell you the stories that came out of that day were amazing.  One of  the  first cars,   a girl was so moved. She said we were going to make her cry.  She explained her family member was murdered  over the  weekend &she was having an emotional day. We met a guy who has 2 siblings that battle brain tumors. A mother with her daughter explained they didn’t have a bt but have battled an illness and david’s story was inspiring.  One story that stands out: A young lady  after sharing why we were giving her the coffee and when asked  for the photo  she jumped out of the car hugged me and cried and shared what an amazing story and life he live. She thanked us for sharing.  The day a day filled with hope and and david once again filled the cup of many.

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When you listen do you hear?

This IF ONLY FOR ONE  took place Friday Jan. 29 2016.  I had a pretty busy morning starting with a meeting at BNI .  I always try to maximize my time when at the hospital,  today  wasn’t any different.  I was able to visit #babycarsonsdaddy, great news he is moved back to a regular room in hopes of REHAB soon.  I then stopped in the surgery waiting room and was able to encourage several families.  One lady who’s husband was in surgery for a tumor like what I had just cried when she heard my story.  She said “there is hope? .”  We hugged and I told her about group.  I reassured her that they are not ALONE!   Here is the part I am so glad I didn’t miss.  I left the hospital and on to run some errands. I had to return something and while working with the cashier of course BRAIN TUMORS worked its way in the conversation.  SURPRISED right?  The cashier then says to me I’m glad you are surviving I have a friend who is not.  I of course expressed my sorrow.  She quickly spoke softly and said ” I don’t talk about that here”.   I understand.  As I started to walk away she walked along side and said I just don’t talk about it when others are near because she used to work here.  So does  your friend live local?   Yes She is in hospice.  She was an amazing person.   I asked her name.  I almost fell over  she told me the friend and her husband names and that the husband is caring for her.  They are my brain buddies.   The husbands name is not common so we were positive it was them.   I then told her I have at home sitting on my counter a list with their name to call as soon as I get home.  They were not at group and I have not seen them for awhile and was concerned.   I told her I didn’t want her to think I was crazy let me pull them up on my contacts.  I asked her if she would verify the last two digits of their number.  ” YEP”!!!!  I called and the husband was so happy.  He said he had showed to group NOV & DEC and he didn’t know we didn’t meet but met with the chaplain instead.  While on the phone I could hear him tell his wife  ”The lady who teaches class is calling she remembered us.”  It was so sweet.  I confirmed it was ok for me to visit and  I went to hospice that night a few hours later.  The cashier and I met at the Hospice and we still just shake our heads on how things happen for a reason.  The important part to mention is it was while I was shopping The cashier was putting stuff away.  In passing we exchanged a smile and a hello.  It was because of her kindness I choose her register when it was time to handle my transaction.  I could have gone to any number of registers but it was the smile the simple hello , her kindness that drew me to her.   If we stay aware of our surroundings. If we  listen we just might hear and if we hear it’s up to us what to do next.  It’s a bitter sweet walk that I walk but I wouldn’t want to be anywhere else than encouraging my brain buddies EVERY step of the way

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My Medical “IF ONLY FOR ONE”

AS MOST OF YOU KNOW:  My true brain tumor journey started in 1992 when my grandma was diagnosed and in 9 wks died. My grandma was my first IFONLYFORONE. More about that on my website under my story.   This BLOG  is about my  MEDICALIFONLYFORONE.  It never occurred to me to count the one who pushed for answers. The one who helped save my life.  For the sake of the story a quick background.  In 1997 I was experiencing a lot of symptoms for what we thought was a  sinus infection, relentless headaches then visual issues.  I even was diagnosed by my dentist and treated for tooth pain getting a root canal HMM? Pain didn’t go away headaches  persisted.  MY Medical IFONLYFORONE  is Mr. Grepling who earned the nick name GREPSTER.  He was my fireball.  It was in the summer of 1998 that Grepster said ENOUGH!  My headaches were not giving up and he didn’t believe it was stress from work or family life and treatment for sinus stuff was not making things better.  Grep was creative and said let’s refer you to a neurologist and see what they can do.  HMO declined the referral.  Of course we had to fight the system to see the  new doc.  WHALLA Grep got that through the red tape and worked it out.   With the new doc together they got the much needed MRI.  Oh, that was only because we threatened HMO that we were going to go to the State  with a complaint they were interfering with my health yadda yadda .  My brain tumor journey as you know got started as soon as I got the results.   My point is Grepster was my MEDICALIFONLYFORONE!  He fought for me.   He cared enough to deal with the bureaucracy.  17 yrs ago was the  start of  NATIONAL MEDICAL SYSTEM CHANGES  but he cared enough to fight for me.   Well Grepster was my P.A .  My primary Dr. is who I usually see and during a visit a week ago or so  I got wind Grep was retiring.  OMG panic set in.  Last year my Neuro Onc retired,  3 years before that my neurologist of 14 yrs moved on.   When it came to  Medical Care system challenges she was a fire ball and the community dreaded her fights.  Sadly  the medical system changes caused her to close her practice and she took a job at the VA,   I was devastated.  Now Grep????  My go to person when I need a pistol.   I truly was having separation anxiety.  Don’t get me wrong my primary doc is amazing I have been at this office since birth ( NO JOKE)  and seen my share of changes. He has been my doc for 30 years.   There is just  a special connection when someone finds cancer in your body and potentially saves your life.   So after hearing of the retirement it was so weird.   Funny how things work I got this crazy cold and choose to  scheduled an appt  with Grep.   Ok so  really no cold I told the  scheduler  I would be a cash pay patient.  I wanted an appointment  to wish him the best .   Really cool for Grep is his wife was retiring  also how AWESOME.   We chatted on how the medical system has changed and for him it was time it just isn’t what it was when he started.  He’s retirement age yet still young , healthy and well  so  I say GO ENJOY LIFE & YOUR WIFE!  Well I still was feeling a bit sad.  It’s weird because even my Neuro Surgeon retired ( but we are friends and talk all the time) so I am ok.    This was different though.   I left that day was sorta weepy but happy for he and his family.  That was before Christmas.  Now I kept thinking wouldn’t it be cool if I showed up  his last day and dropped off a gift just to say you will be missed and be one of his last patients.  Then I thought ok don’t get KooKoo.  After all the office is staffed with girls and girls gossip so I figured its just a chapter closed and this was #MEMORYMAKINGMOMENTS at is best.  I had plenty to keep in my heart after all he was my MEDICAL ONE great story.   Well the morning of the 31st I get a call from my primary docs assistant to tell me some paperwork for my insurance was complete and if I wanted I could pick it up or they could mail it.  Oh my goodness I thought “ITS MEANT TO BE!”   I said I would pick it up and guess what.  I got to deliver that card and let GREP know that I never realized he was the first MEDICAL ” IFONLYFORONE”   He made it possible for me to help families in 21 countries almost all 50 states.  I shared “Don’t leave thinking it’s a system that sent you away from a field you loved.”  You made a difference,  you helped people in places you never dreamed.  The best part of the day  ” I” was the LAST ONE!  The Last patient he met with before retiring.  As I parted I did remind him now that he is no longer my doctor he and his wife can now attend Gray Matter Foundation events because it’s not breaking the doctor rule  LOL.   He retires and I don’t feel sad I am happy that he was my medical IF ONLY FOR ONE.  I close with this  Galations 8:9  Let’s not get tired of doing what is good, for at the right time we will reap a harvest—if we do not give up.

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It’s more than “just” a chair to me

My amazing relationship and bond with my Grandma  Kirk started many years ago.  I am her second grandchild of 9.  I can recall visits as  a young child to her home when she would baby sit.  I of course remember visits and holidays  like when my parents took us to her neighborhood to trick or treat. Oh how  I remember the love she shared.  I smile just thinking of  her belly laughs.  I remember all the good.   My parents and I lived with my grandma for  2 1/2 years before my parents divorced.   Living with her of course was a great relationship builder for me it couldn’t be  helped.  The  time with my grandma created a special  relationship  different than the others had with her because it allowed me to become very close to her.  She would take me to church with her and to her bible studies and I was even with her when the ladies had their Christmas parties and special get togethers.    I am still friends with my grandma’s best friend Byra who led these groups.  I reconnected with these ladies through Byra.   It was great because all the ladies that new me as a kid shared stories of my grandma and how much I resembled her in appearance and they really loved to see me because I radiated her  kindness.   Something special I learned in attending their studies was Byra had kept the chair my grandma would sit in when she attended the meetings.   It was a casual chair  nothing heavy or super fancy but it was THE CHAIR  my grandma sat in EVERY TIME she was at Byra’s.  The chair was now kept in Byra’s room,  her special reminder of my Grandma.  When I first started visiting Byra and her husband they showed me it.   Bob said when the time is right they want me to have it.   I was so moved and overcome with emotion.   I just couldn’t imagine the chair I sat next to on the floor as a little girl while all the ladies would have their bible study would someday be mine.   I know it sounds trivial ITS JUST A CHAIR right?  I am a firm believer in things are just that ….THINGS  but this chair it has meaning.  The chair she sat in when she would share her heartache ( believe me she shared a lot of personal heartache).  It was the chair she sat  in when she lifted her hearts desires to GOD.   My grandma taught me about what was important. I watched her.  I remember.  I trusted her and she never failed me.  She took me to church and I would someday take my kids to the same place and they would go to the private school there.  She always told me and I never understood then but know now  if you need someone to pray with call Byra she’s dependable.  I used to think OK yeah right grandma.  Then it was that one day in 1992  she was getting ready to have surgery to remove her BT and reminded me if you need prayer call Byra.  Sorta scared me why would I need to call Byra if she was going to be ok.    Guess what six years later me at 28  I was a single mom  diagnosed with Brain Cancer & I went on a mission to do what my grandma said.   Find Mrs Byra.   I found her!  the story unfolded and I am blessed with more memories than I could have dreamed.  This small group of less than 10 beautiful ladies over 17 years later were now my new grandma’s , aunts – Friends  just like my grandma told me.    Now  Sept 15th 2015 would have been my grandma’s 85th birthday  she died 23 years ago so the only connection to  who she was  outside of  a few family members are these ladies who are aging also.   Well Mrs Byra called me last week and asked me if I would pick up the chair.  She didn’t realize it was my grandma’s birthday I think GOD did.  I of course right away asked if everything was ok????  She said yes.   I scheduled the pick up.  I got to visit with my grandma’s best friend and also got the best gift ever.  The Chair .  Byra reminded me that this was the chair my grandma would  sit in EVERY TIME she was at her home.  She wanted to make sure I had it.   SEPT 15 2015  I received a gift and not just a chair!   It was a chair that WAS THERE.   It held the person I loved.  The arms are wooden you can feel where over the years it has been touch.   I have the chair in my extra room with my Bible next to it.   I now go and sit and don’t have to say anything just reflect on the memories.  She touched those arms,  this held her body , her burdens, her love.  It’s not just a chair.  This is a chair that held my grandma when she could be who she was.  She didn’t have to put up walls , she could share heartache and know she would still be loved.  She trusted when she was in this chair, best of all I was blessed to be part of the memory.

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Remembering the goodness my Grandma taught me (she has been gone 23yrs today)

August 30th 2015 marks the 23rd anniversary of the night my grandma took her last breath.    I would like to focus on what the day did for me.  I would like to focus on how that night changed my life for the better.  It was this loss,  this moment,  the journey,  the moment in my life that would be my life changer.  Although that night broke my heart I choose to take the power from the three letters GBM ( that is an AGGRESSIVE brain tumor)  that caused her death and focus on the peace.  If you know me you know my faith is 100%  of what gives me my peace my strength.  If you know my story you know I lived with this grandma a good portion of my young life and that her foundation for life was her FAITH.  Knowing her faith was her comfort then you will understand that it was for that reason I was able to find some comfort when dealing with the finality of her death.  It was her reassuring  us, “the family” she would be just fine because when she died she would be in heaven with her Savior.  This was 100% of how she lived.   I choose to keep the memories of how she lived and how she professed to be for eternity as my comfort.  Brain tumors are not a pleasant journey when they decided to go crazy.   23 years ago and the fact she opted for no treatment  after surgery her BT journey was short.   She was diagnosed on Father’s day and approximately 9 weeks later I was watching her take her last breath.  Those days leading up to that evening were such a whirl wind.   I will spare you the family turmoil which that in itself is heartbreaking to say the least.  Families should come together not divide another reason for my passion to share hope, kindness and knowledge about how this disease can destroy more than the patient if not prepared to cope as a TEAM.    I know reading my words , telling you the bits and pieces of my journey only touches the surface.  Pain is personal.  I never want to imply mine is more painful than yours.  Each family copes differently.  The fact is I miss my then 62 year old grandma.   I hope you know I hurt with you when share your pain.  I’m also happy when we celebrate your success, your milestones your TUMORVERSARIES ,  the completion of treatments.  I love it when we are “CELEBRATING” YOU.    I believe in success, Faith &Hope & Love and I sharesupportnotstatistics and believe in what I say because I have seen just as much good even in the sad.   This day 23 years ago sparked something so deep I had no idea then but now I know it created what  I was meant to do in life.   Who could have imagined that my words “I WANT TO BE A VOICE FOR THE CAUSE” six years later would mean I would start a personal journey and experience first hand the pain of brain cancer physically.  7 years after that  I would be the founder and president of a non profit called THE GRAY MATTERS FOUNDATION. I currently communicate with families in 21 countries and just about all 50 states.   So  today  I choose to share the  goodness this journey brought.   Thank you grandma Kirk.  Thank you for the years you taught me so much.  Thank you that when I needed the education most I was prepared.   I encourage all of you reading this  take time to learn in all you expierence.  Slow down and have ears to hear, eyes to see and words to make a difference.  It won’t be perfect but sometimes right in the middle of the pressure  you are being designed for your purpose.   The seed of your success  might be growing and someday you will know that what you are doing is everything you were created to be.  It was that one night 23 years ago that started my walk to find my ifonlyforone and I didn’t even know it.  *PS.   TODAY I WILL CELEBRATE AND ENJOY A DONUT AND COFFEE IN HER MEMORY

 

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